MS Discuss: Caregiving and working

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dez3boys
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Topic: Caregiving and working
Posted: 06 Apr 2009 at 3:19pm

My husband has had MS since 1990 (now progressive but holding steady due to treatment). We are both in our early 40's and have three children from ages 3 to 15. His mobility is restricted and get around mainly by scooter. He stopped working several years ago, and has been looking after our three children with the help of family members and part-time baby-sitter (our much appreciated support network!). I have a very good paying job but it is demanding and the hours very long; as of late, his health has not been good and he has become very dependant on me. I'm looking to make a job change to find something more flexible but have to keep a high wage and good benefits as I am the only wage earner. I am wondering if anyone else has changed jobs or careers to accomodate their spouse's health issues, and if so, any advice? I'm really looking for opportunities to work from home or take a reduced salary in lieu of more vacation time. I have concerns that if I take anymore time off to care for my husband, my current contract will not be renewed.

And, also wondering how others deal with the exhaustion and other emotions from caregiving? I would appreciate any feedback.

thanks.

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Sandy
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Posted: 25 Aug 2009 at 1:03pm

Hello dez3boys - I am saddened that no one has responded to your posting as of yet. I am also glad I came across your posting as I am also the spouse of a man with MS. I was working full-time until recently and am raising our two children (8 and 15). I remember when my husband was getting around in his scooter (about 11yrs ago). Presently my husband cannot move at all except to speak or blink. He has lost all bowel and bladder functioning. He has a foley urine bag and g-tube for feeding (swallowing mechanism not working properly - any food or liquids from his mouth will go to his lung then he gets pnemonia so had to place in a g-tube) and a trach and vent to aid in his breathing as his lungs and diaphram are not strong enough to do all of his breathing. It has been a long and difficult road and was doing well until a few months ago when I began to feel deeply I can not manage. My graceful art of denile and just pushing myself failed me and I began to break down. The physical toll is great but now the emotional toll has spun me into a state of sadness - there is no hiding from what is going on - reality is seeping in like water in a sinking ship. I encourage you to take from life everything good you can. Enjoy your time together. Rally as much support as you can around yourself, your husband and your children. Call the MS Society, the March of Dimes (for reno's when the time comes), the CCAC. This is a challenging road but do not fret - it will strengthen you and you will be able to manage (at least most of the time - I have temporarily lost my strenght but hope to regain it soon. There are many rewards near the end as you realize the gift of a wonderful person's life (as I am sure your husband is) has been placed in your hands. Your love for each other will carry you. You asked about the exhaustion and emotions. There was a time when I was very angry - I think it was part of a natural process. Looking back I would say the best solution would have been for me to find some supportive friends who understood that I needed to vent so it would not come out onto my family. Unfortunately I was home with a newborn at the time and getting out was difficult and a lot of my friends stepped back or maybe my anger pushed them away. I think if you let your supporters know what you are doing and why it will be easier for them to stay with you and support you. After coming through this anger period I moved on to a level of acceptance and saw that my anger was like spinning my wheels in mud - wasting my valuable energy. I set some ground rules. I must eat three meals a day (I was skipping them and loosing weight) - I must sleep seven to eight hours a night (I was getting up in the night with our daugher and for my husband). Getting sleep is imperiative. When I am eating I do not answer the phone or the door. I had to put ground rules in place. This is my foundation upon which I can function better. I began to lean a bit on my son. I would not suggest it unless it is within the regular helping that other children do. Do your best not to go over those boundaries - I guess I did it too often and now my son values freedom more than responsibilities (maybe that's just being a teen). Let your kids remain kids - this is so important for them yet it is hard as it means it is you who takes on most of the effects of the disease (next to your husband of course). It will be you who will have to go without - no walks along the beach holding hands - no vacations - no donw-time, no new clothes (equipment and supplies for you husband and things for the kids comes first) etc. I have been told I need to make some time for myself - this should have been added that into my foundation. I know this is right but it is so impossible at times and difficult at other times. It is easier to bypass the 'time for myself' but maybe I am paying the price for that now with this sadness. Not sure. I do feel though in spite of everything I will get myself back on track in time. I must get strong as the future is going to be even more challenging. In time you will see that your husband will need you more than ever - in time you will see that it is an honour to care for him, fight for him and oversee his care. In the end I know I will have peace of mind knowing I did everything I could to make a most wonderful man's life better than what it could have been. I wish you all the best and would love to hear from you. I hope what I have shared will help. Sandy

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dez3boys
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Posted: 26 Aug 2009 at 3:18pm

Sandy,

I am so glad you contacted me. I read your other posting as well and am completely awed and inspired by you (which seems odd because I really hate it when people say that about me). I can't help but think that I am living your past and you are living my future. I am sorry to hear that you are struggling right now but not all at surprised. You need to keep taking care of yourself. It is like the drill on airplanes with the oxygen masks in case of emergency - if you have a dependent with you, put your mask on first, then assist them - you are no good to them if you are not ok.

I don't know why we don't hear more from the other caregivers - maybe they are just too exhausted. I know one older woman in the same situation. Her husband is quite sick now and has been hospitalized for some time; she had taken care of her mother for many years as well before she passed on. They didn't have any children and were very well off, but she seemed to age quickly and looks years older than what she is. She is a wonderful person, but it seems that her life has been sucked from her - I see that with other female caregivers, too - people who give up everything to take care of a child, spouse or parent.

I understand the anger - and also the despair, the loneliness and the grief. Although Tony, my husband, is relatively still healthy, we know that his medication is no longer working and that the MS is progressing. Every few months, he loses something. This summer, we accepted the fact that he won't be going on anymore family vacations with us; my boys and I went to NB without him and although we missed him, it was much easier and a lot less stress. He seemed happier to stay at home, too. I know what is coming and believe it or not, I am grateful that you have described your husband's current situation in such detail. I need to be prepared - not just for me but for my children as well.

It is wonderful to hear about how you still love him and how much joy he gets from you and the children. That was the one thing that touched me the most. I still love my husband as well, and am very committed to him, but we are in a transition where we are moving away from couple to caregiver and care recipient; that is what I grieve - the loss of my partner. My life is more and more independent from him, and more often than not, I feel like a single mother. It is not just that he cannot do things anymore, but that he has emotionally withdrawn himself from us. He is not happy, and if he finds any joy in his life, he doesn't express it. I used to get really angry - not directly at him but at this disease, and would be very frustrated with everything. My own health was suffering and I felt completely lost. A couple of months ago, a friend offered a relaxation/counselling service - basically it was about breathing and releasing the energy in your body. She was the only person who I ever really opened up to, and once I started talking, the emotions, anger and tears kept coming. I thought that most of my problems stemmed from my job, but the sessions revealed that everything came from my relationship with my husband and the MS. I was carrying an incredible amount of stress - even more than I realized - but the session was remarkable and has helped me in so many ways. I am hoping to go out to Ottawa this fall for another session with her and to have some time to myself.

Thank you so much for taking the time to tell your story - I wish there was an answer to help you but all I can say is I hope you take the right steps to getting yourself healthy. I would like to keep this dialogue going and I would be happy to send you my email if you wish.

Denise

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Sandy
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Posted: 29 Aug 2009 at 3:38pm

Hi Denise: Thank you for your response. It would be great to exchange email adresses - not sure if we are suppose to do this through the forum or some other way - I am new with this so am not sure. I would like to keep this dialogue going also.

I noticed I did not mention ideas about managing the demands of working/caring for your husband/caring for your children etc. So so impossible at times to do it all - have you ever looked into a live-in caregiver or a nanny?. It is so important to keep your good-paying job - in time the benefits to cover nursing care will be very helpful. Maybe your work policy might cover some PSW hours. Have you ever talked to your manager about doing some of your work from home? If your husband is unable to shower without any help he would be eligible for PSW hrs from the CCAC. Google CCAC (Community Care Access Centre) and go from there.

There was a time when my husband withdrew emotinally but he re-engaged after a long period of time. I remember in that time whenever I asked him a question he would answer, "I don't know" and appear annoyed as if I asked him a stupid question. Perhaps the MS was affecting his brain in some new way. Today he is very present; asking us often how we are doing. The only time he drifts off is when he is sick with another pnemonia or bladder infection.

When I read the part in your response about going on vacation without your husband it made me cry. I remember when I made that decision. It just wasn't the same - it didn't really feel like a vacation to me. Now we are use to it and at first John was more content to stay home as all the fuss and movement got to him. And yes the level of stress was a lot less. Now I can tell that John really wants to go with us - it is hard when we leave but we tell him all the details when we get back. We do not go as often or as far and it is really just the departing that is hard.

This relaxation/counselling service sounds intense yet very rewarding - can you share a bit more about it, I am interested in learning more.

It would be great to share our experiences and offer support to each other. So nice to share with someone who 'knows'.

Sandy

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dez3boys
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Posted: 02 Sep 2009 at 10:59am

Hi Sandy - the lag time between postings is so long on this site - I'll send an email to the administrator to see if they can exchange our emails without having to post them here. On one hand, it is nice to have our comments available to other caregivers, but there is so little traffic on this forum and it takes so long for the comments to be approved and posted. In addition, there are stressful times that we caregivers need to vent and express our frustrations that those with MS would rather not hear about - you know, those rare dark moments when it just all gets too much.

The demands of working/caregiving/child raising are a constant struggle but we have supports that make it possible. I have a very good job with full benefits for my family, and with somewhat flexible hours. It is demanding, and there are many days were I work late. When I was hired two years ago, I was upfront about my husband's condition and they acknowledged that there would be times when I may be unable to be in the office. I can work from home if necessary and have done so several times, and our goal was to have me working from home more often or at least closer to home. The managment has changed in the last few months and I don't see the same commitment as I did when I was first hired. I still look for other opportunities and hope that it will get easier (ha!).

I don't think my husband, T., is at the stage yet where he needs a fulltime caregiver and I know that even if he was, he would resist it. It took him forever to agree to use his scooter. Although we have a fully accessible home, he didn't start using it in the house until after he had taken a fall and injured one of our children.

Most days, he can manage fine when alone - if he is having a rough day, he will just sit and rest. We only have one child not in school yet and he goes to a sitter. T still has the occasional day where he is capable of looking after the children, doing the laundry and preparing dinner. Every afternoon, his sister, a retired nurse who lives on our street, picks up the two youngest children, helps the middle one with his homework, helps with laundry and dinner, and get the kids bathed and ready for bed. She will usually stay until I get home. We have a cleaning lady who comes in every week. We also have other family members close by who are available to run errands, take T to his appointments and take the kids if needed. T doesn't leave the house much - he always needs to be close to the washroom - and doesn't like to drive anymore. Our teen is a big help as well, but I don't want him to take on too many responsibilities just yet. The evenings are pretty good when all is going well; weekends are crazy, though. I am usually completly spent by Sunday night and looking forward to getting back to work. The physical exhaustion is one thing, but right now, it is the emotional part that is hardest for me. My life is completely occupied between work and home - I really don't have any close friends nearby anymore and if I did, I wouldn't have any time for them anyway. The majority of my social activities revolve around work (I attend a lot of benefits, conferences, receptions,) which I usually attend on my own. We do spend a lot of time with our extended family which is nice. Although I am rarely ever alone, I am so very lonely. You said that your husband would say "I don't know" when you would ask him a question - my husband does this. He doesn't want to make any decisions and rarely intitiates activities or conversations. He was always a strong take charge kind of person and I was very attracted to that. Although I am a strong individual in my own right, I feel that there is no one there to share the load with me.

Sometimes this makes me feel so guilty - I look at him and realize what he has lost and what he is struggling with everyday - how I can feel bad about being lonely? But I feel it to the core - like a big load of grief that is all consuming. I am trying to cope with this in as healthy a way as possible - talking with my counselor friend, good books, exercise (very hard to fit in!!), healthy food, me-time (extremely hard to fit in!!), and fun times with my kids. Some not so healthy things creep in to, like too much drinking (which is also a hazard of my job), emotional eating, but these are thankfully curbed. I guess I am in a really weird place right now.

And before I go, a word on vacations. We took our first trip alone together since we were married last winter - for christmas, I surprised him with a trip to Las Vegas. The travel agency arranged everything so that it was completely accessible, and Las Vegas is an excellent city to get around if you are disabled. We both loved Vegas and he was so happy - better than he had been in at least two years. Although I was pretty exhausted by the end, I'm glad we did it and I'm hoping to plan a similar getaway this year. We were never able to do this before for financial reasons but we now have this small window of opportunity where we have the resources and T is still able to enjoy it. This makes the loss of the family vacation a bit easier to accept for both of us.

thanks for sharing, Sandy - talk to you soon.

Denise

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Miyoko
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Posted: 12 Sep 2009 at 9:30am

Hi Denise & Sandy: I read and re-read your posts. I did not know MS could bring so much problems in our body. My heart aches for your emotinal and physical struggle...and I wonder what goes through your husbands' mind. My MS is still manageable, but I get sotired after doing one load of laundry. How I wish I could help you to release your emotinal and physical burden even for a week.... Your posts are important for all of us affected by MS. Many people read your posts...but perhaps do not know what to say to you. Do let us know from time to time how you are doing. We will all be behind you.

Miyoko

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Sandy
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Posted: 09 Jan 2010 at 7:39pm

Hi - Sandy here - my computer was broken for about five months and I finally got it fixed yesturday. Everything is still about the same. My husband has been stable for about four months now (no hospitalizations!!) This is fabulous news - we are so pleased. I had a dream last night that he was walking - we were laughing, gazing at each other and kissing - everyone around us didn't know why we were laughing. For us though, "Hey! He's walking! What a gift!!!!" I hope this CCSVI research will let this dream come true. Does anyone know where someone living near Toronto would go to have the vein ultrasound done? Our daughter just turned nine. She is having a sleep over. Her three friends wanted to go in to see my husband, (their friend's father). So nice of them. So good for him. I am so glad I have fought long and hard to keep my husband at home. We have hired some really good people who really care for him. Although most of his care is up to me and I am responsible for way too many hours each week, it is all worth it to see his smiling face looking at his daughters' little friends at her birthday party. MS is such a wicked disease that robs people of a normal life (especially at end stage Chronic Progressive) but when you get those moments with healthy happy exchanges it becomes so overwhelmingly rewarding you feel so greatful. Glad I have made the right decision to keep my husband at home regardless. I have made some changes to the nursing schedual (43hrs from the CCAC) and this should help a great deal as now the nursing coverage will match John's time of higher need. Now the shifts are three hours instead of 12 (if the CCAC will agree to switch some of the 43hrs to another nursing agency). Also if a nurse is sick and cannot come to work (I am the back-up plan), I will need to cover a smaller shift instead of a 12hr shift plus my own shifts. So glad to be connected to the MS forum readers/writers again. Sandy

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