Once you have accepted that a care facility is the only way to proceed if both you and your spouse are to survive the progression of the chronic illness, and you have chosen a facility that is appropriate for your spouse, the next step is to adjust to your new role as care giver.
Having been released from the constant physical care giving, feelings of tremendous guilt and self-doubt sometimes surface. Last week, you could barely do the transfers and other care jobs without physical risk to you both. Today, you wonder if you couldn’t have managed a bit longer and your feelings of guilt have you wondering if the placement was premature.
Your freedom from the physical tasks of care giving gives you pleasure and that pleasure gives you pain and feelings of culpability. The well spouse’s adjustment to her partner’s placement is as radical and difficult as that of the ill spouse. It is just different.
Therapy can often help. A good counselor who has experience with chronic illness can help you during and after the placement. But one that has no knowledge of what care giving can do to a family may be disastrous. Choose carefully.
Use your newly-found free time constructively. Make sure you do something positive for yourself. Do not stay at the nursing home all day, every day. Doing that will not allow your partner to make the adjustment to his surroundings and will only give him a further message of his own inability to cope.
Keeping him as independent as possible is important to both of you. If there were things he did at home competently, whether laundry or taxes or reading the paper, try to ensure that that will continue in the residence. One well spouse whose husband was mentally alert but severely physically impaired continued to bring him the bills to pay. She did this despite the nasty looks she received.
She felt it kept him involved and let him continue to feel like a productive family member. Another refused to pay for laundry service but chose to do the laundry herself in a coin operated machine on the premises just so that her husband would continue to be the one to fold the laundry as he had done at home. She told me it was one of the routines they could continue to do together that kept him from getting mentally institutionalized.”
Join the support group that is available for family members at most residences. It will let you meet people who are coping with the same roller coaster of emotions that you are experiencing. A good support group will help you through the transition period of placement and will enable you to meet survivors of the process who can be wonderful mentors. It can also help you effectively deal with things in the institutions that you are not happy with.
Ask people to visit your spouse and even take him out for a meal or a trip. If your family and friends are willing, you can draw up a visitor’s schedule. This will ensure that people don’t visit at the same time. It will maximize the number of visits your spouse has and will leave you free to do other things knowing he has company. You can then schedule your visits on days when visitors are scarce.
Tell the visitors to come prepared with things to do with your spouse. Card games, hearing an interesting D’var Torah, or setting up a weekly learning session all give the ill spouse things to look forward to and provide the visitor with direction.
Get a schedule of the facility’s activities. Encourage visitors not to visit during times he is participating in an activity he enjoys. Visits during “down time” will keep your spouse stimulated and busy. Lots of free time, with nothing to do, will hamper the adjustment to the placement and foster discontent.
If possible, arrange for your family to come and have a family dinner together once a week, or more, if possible. Most places will have a room where you and your family can order in kosher food and enjoy a dinner together. This not only provides a nice break from the routine of the facility and gives your spouse something to look forward to but also reminds everyone that you are still a family unit despite separate accommodations.
Keep your visits positive. If your spouse is having difficulty with the placement, your visits may be tense and difficult initially. Do everything you can to leave any negativity at the door of the facility. Try to remind your partner of the positives of the placement and how the placement is beneficial to you both. He may now romanticize memories of how good it was at home and need to be reminded of the reality.
Allow yourself to begin to heal. If you have been care giving for 20 years it may take 20 more years before you can lose the stress that came with 24/7 care giving. But it needs to begin. It will be a lot less difficult for you both if you are able to see the placement as a beginning − that of a new aspect of your lives instead of an end.
You can contact me at [email protected].
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